My Brother Is In A Psychiatric Hospital - Help Needed

The friendliest place on the web for anyone that follows U2.
If you have answers, please help by responding to the unanswered posts.

Reggo

Blue Crack Addict
Joined
Mar 30, 2007
Messages
26,992
My brother, Riley, is seven. He has autism.

Day One:

On 27 January, he severed his right pinkie toe because he was in a rage and trying to kick his way out of a padded time-out booth in his classroom. I was called to the school, since my mom was at work, just told that he'd cut his toe. His teachers had wrapped it up and I got on the phone trying to find somewhere where we could get him fixed up. After being on the phone for about fifteen minutes, I found an urgent care clinic who had an emergency spot open. So I got Riley in the car and drove over there. The doctors there took a look at it, and said that he had to go to Primary Children's Hospital because the injury was too severe for them to take care of. So I pretty much fly to the hospital,calling my mom and telling her to meet us there. In the meantime, my brother is still in a rage, banging his head, screaming, clawing with his fingernails. We get to Primary Children's, my mom arrives while we're still waiting in the lobby to be seen, then we get taken back to the triage room. And we see the extent of the damage. His toe is barely attached by a small flap of skin and muscle. So they decide to get some x-rays, then sew him up. I have to go to work that night, so I leave the hospital. Riley gets his toe sewn up, bandaged, and released. Not a mile from the hospital, my brother, who hates band-aids on his skin (and other people. He takes them off anyone), rips off the bandage and pulls out 4 of his six stitches. My mom turns around and drives him back to the hospital. The trauma room he was in had not yet been cleaned, so they put him back in the same room and did glue and steri-strips, as he hadn't gotten to the inner stitches, just the outer ones. My mom makes it home with him, and he's still fully enraged. After getting Versed. Midazolam - Wikipedia, the free encyclopedia She sits on the couch with him, he wraps his legs around her neck, chokes her, and pushes her face into the couch and she can't breathe. She pinches him hard enough that he lets her up, but then he kicks her off the couch and kicks her with his good foot until she crawls away. My mom calls me at work, I rush home and we have to hold my brother down until 1:15 AM till he finally gives up and goes to sleep.

Day Two:

He's awake somewhere between 5:30 and 6:15. Still in a rage. Determined to get at his toe. I held his foot up and out of his reach, but he did some manner of fancy move and popped the glue open and it starts bleeding again. So we load him in the car. I sit in the back seat with him and he headbangs me and breaks the stem of my glasses. I carry him into Primary's emergency room and explain that we had just been there the night before for his toe and he's reopened the wound again. Third time in 24 hours. So he's taken back to a trauma room and he's beating me and my mom up with his head, he wants to rip his toe off, and his eyes have fully dilated. In a bright hospital room. The docs say they can't do anything about the wound because if they try to put neosporin on the glue, it'll dissolve it into his bloodstream, which is bad. But they don't even wrap it in gauze, though the bleeding has slowed to just an ooze. They decide it'll be a brilliant idea to put a walking cast so he can walk, but he can't get at his toe. Yeah. Genius. They strap the boot on him and he immediately pulls his leg out the top. They don't give us another solution, though, they just send us on our way. With him raging and able to escape this boot and get at his toe. While it oozes blood into the foam. We call his psychiatrist, Dr Traci David, and she gives us a prescription for Clonidine, which she says will calm him down. Clonidine - Wikipedia, the free encyclopedia We give him one half of a pill at 3:45. If anything, it sends him into the stratosphere. He does not calm down and is still just raging and trying to get at his toe. I have to go to work again, so I do, with great trepidation, and my mom calls his psychiatrist again, saying she needs something, she needs help. The psychiatrist suggests she give him the other half of the pill and see if it has any effect. It doesn't. My mom calls me and I come home from work to help hold him down while my mom's on the phone with the University Neuropsychiatric Institute (UNI). They realize that Riley's in crisis and has been since before he even hurt his toe, and that we need to take him to Primary Children's to house him there until there is a bed available at UNI. So we take him back to Primary Children's. My mom and I are emotionally exhausted and Riley's at the peak of his rage. He bangs his head so hard and so much on my forearm, I have to let him go, or he's going to break my arm with his head. We take him to a triage room and they put a security guard with us. To protect my mom and I from Riley. And Riley actually tries to attack the guard. The guard is so startled, he reaches for his taser. They take us back to another trauma room where there's no TV, no medical equipment besides a bed and a sink, and the security guard stands outside the door, just in case the seven-year-old decides to attack again. They give him the maximum dose of Versed to knock him out and let him sleep and us relax a little. Well, my mom and I can't. But Riley goes to sleep. Sort of. They come in and do an EKG. Which is normal. Then they need to do a blood draw. Riley at his happiest hates needles. But he's knocked out with Versed, right? Should be no problem. There's one orderly who's about 200 pounds holding down and arm and his head. Another laying across his waist and holding the arm they're drawing blood from. My mom is laying on Riley's knees and I'm at the foot of the gurney holding his feet down. He's throwing us around like we're nothing. And growling and his eyes are fully dilated again. On the maximum dose of Versed. After the blood draw, we get him back to sleep and sit there in silence until he's taken upstairs to the Neurotrauma unit, as Primary Children's does not have their own psychiatric ward, to hold him until a bed is available at UNI.

The next few days are stressful, to say the least. Riley has to be in restraints, be they chemical or physical for most of the time and he's still so enraged and such a wiggle-worm that he manages to still bang his head and nearly do somersaults with all four limbs tied down. At Primary's, they start him on Zyprexa. Olanzapine - Wikipedia, the free encyclopedia Also at Primary's, Riley gives my mother two concussions from acting like he was going to be sweet, and then headbanging her as hard as he could. I have nothing bad to say about the nurses or the techs at this hospital. The psychiatrists, however, are another story. my brother had just severed his toe and was banging his head a lot. They denied him pain medication becuase he didn't ask for it. Riley doesn't have the verbal skills to ask for it in the first place. Even after his pediatrician, Dr Paul Carbone, ordered for him to have regular pain management, they did not give him any unless we prompted Riley into asking for it. There was one psychiatrist in particular who was a total, forgive my language, dipshit. He's helping us hold Riley down so the nurses can change the dressing on Riley's foot and says to my mother, "So, you're gonna be taking him home in a day or two, huh?" I wish I was kidding. Then later, when Riley's awake and calm for the first time in quite a while, he says to my mom, "Well, you better get used to the idea that he's going to be in UNI forever." He says this in front of Riley, who can understand him. He can't express that he understands, but he understood that. Finally, the day comes when the bed is available at UNI, 1 February. And the nurses come and ask us if we want to take him to UNI in our car or if we want an ambulance to take him. Well, let's see. Do we want to take him in our car, where he can still fly into a rage and injure us, especially when we don't take him home in our car, we take him somewhere else and have to leave him there, or strapped to a stretcher in an ambulance with medical personnel who can help hold him down and where he'll be safe? Yes, we went with the ambulance.

UNI:

Well, the first week, they still had him on Zyprexa and added Tenex Guanfacine - Wikipedia, the free encyclopedia, a high blood pressure medication that's not supposed to be mixed with an antipsychotic like Zyprexa. He's still on both of these medications at present. But back then, they were overdosing him and he slept for most of the first week. My mom called Dr David and she told them to stop overdosing him and find something that is a long-term maintenance medication. Most recently, they want to send him home or to a group home. And they're supposed to be monitoring his blood chemistry. They're monitoring shit. We have a case for abuse and neglect and the state's attorney is ready to take it against UNI. He's not ready to go home when he has a violent meltdown for two hours, beating his head against a concrete floor and clawing at anyone who comes close and tries to stop him from hurting himself. The kid up at that hospital, in that room, is not Riley. They are drugging him with Ativan if they even think he's going to have a meltdown, not when he's up for four hours in the middle of the night screaming for God only knows why (probably because his toe hurts [god forbid his toe hurt after he nearly severed it and he kicks the concrete wall when he's melting down!]). They told me and his teacher to OUR FACES that he hadn't had anything extra yesterday when we both kept saying that he seems out of it and his eyes were glazed over. THEY DOSED HIM WITH ATIVAN TWICE IN FOUR HOURS CAUSE THEY THOUGHT HE WAS GOING TO ACT UP. This Zyprexa that he's on has twenty billion lawsuits against it, it affects liver and kidney function and can cause diabetes. I mean, yesterday we talked to his regular psychiatrist and we totally shot down the idea of him going to a group home and she was all for keeping him at UNI and trying new medicines, getting an EEG to see if the random, violent ones that have no trigger are possibly seizure-related and getting an upper GI for him to see if he's got acid reflux back causing night terrors. Then we go visit him at UNI and his psychiatrist talks to the psychiatrists up there and now they're pushing group homes and giving up parental rights. And it's like we've gone through the damn looking-glass. What changed? Who lost their mind? Where was the breakdown in communication? This past month has been a goddamn nightmare. And this is, seriously, just the tip of the iceberg.

Well, let me tell you about Mohammed.
Mohammed is a psych tech who works the day shift on the weekends.
You know what he does to keep Riley calm?
Well, by 11:00 one morning, he'd had 6 bags of chips, 8 packages of cookies, WAS TIED TO HIS BED WITH A TOWEL and was put in a diaper cause this tech didn't want to have to deal with him going to the bathroom and possibly making a mess. The nursing staff had no idea it was going on. Then me and my mom get Riley up and walking and out of his room and away from this guy and he wanted to sit in a chair by the nurses' station, cause there's a picture of a white cat there he likes to look at. Riley's agitated cause he's been fucking tied down for who knows how long, and this idiot decides to try to take his blood pressure. Well, Riley didn't want to hold still for the machine cause he was agitated and he hates getting his blood pressure done. This guy puts his knee in Riley's crotch to try to hold him down. My mom rips off the cuff, grabs Riley's hand, and walks him away from this guy.
This tech, the staff had apparently been trying to get rid of but couldn't until a parent filed a formal complaint. So my mom filled out the forms.
Mohammed was removed from service and we got another tech within about ten minutes.

However, the night before, we learn, after Riley's been up there for 20 days, that there's a goddamn autism expert at the hospital, but he's not assigned to Riley's case. Instead, Riley has a doctor that doesn't understand autism or little kids and wants to turf him cause they need the beds, since Riley has to have a private room with his violence so he's taking up two beds.
This doctor has autism, Asperger's Syndrome. So, yeah, he's the best autism expert you'll ever see. We've asked repeatedly to have this other Doc look at Riley's case and htey keep saying they'll ask him to, but it doesn't happen, trying to implement anything new up there takes a week at least.
It goes on.

Riley doesn't ask to come home anymore. We tell him he gets to come home as soon as he's not so mad and so sad anymore. He gets to go back to school and go to his favorite restaurants and stores and stuff, and it's like he doesn't even care anymore. And the idiots at UNI don't seem to understand that they have not treated Riley. He's not ready to go home when he can't even go downstairs to the cafeteria without having a meltdown. My brother was the sweetest kid in the world, joking, always happy, bouncing off the walls. Up there, that kid, whoever he is, has two speeds: eyes glazed over and almost immoblie, and meltdown. But if we take him out of there, what do we do? Hold him down all day while he has meltdown after meltdown cause he's not on the drugs that sort of tone that down anymore? Get beaten and clawed and what if he hurts someone else? He can get charges pressed against him and we can get sued. He can't go to school if he's still hurting other people. Or hurting himself. There's two drugs that might help him, Depakote and Neurontin. They're anti-seizure medications, so they might help with the random violent, no-trigger meltdowns when his eyes dilate and it seems like he wants to kill and doesn't recognize anyone. And the drugs are also mood stabilizers, so they'll help regulate his moods, too. But no, let's not try either of those. Let's turf him. He's in liver failure due to the Zyprexa. What Are the Symptoms of Liver Failure? The initial symptoms of liver failure are often ones that can be due to any number or conditions. Because of this, liver failure may be initially difficult to diagnose. Early symptoms include: * Nausea * Loss of appetite * Fatigue * Diarrhea (he had diarrhea yesterday) However, as liver failure progresses, the symptoms become more serious, requiring urgent care. These symptoms include: * Jaundice * Bleeding easily (he's been bleeding when he poops, also a sign of pancreatitis) * Swollen abdomen * Mental disorientation or confusion (known as hepatic encephalopathy) * Sleepiness * Coma.

We had a state's attorney on the case ready to drag UNI by their ass through a knothole backwards. But it seems like every time we broach the subject of a group home, that's all any professional wants to do. Even the lawyer, now. We are not being listened to and the case that we had is now being passed off to the Utah parent center and their advocates. If we don't find another solution, we will either have to bring him home, when he's a danger to society, and worry about us getting injured, and possibly starting this whole cycle over again. Or it seems like they're going to force us to put him in the group home. That's not at all what we want. We want him treated at UNI and make him manageable so we can take him home. This is not right. This is not a solution. This is not treatment. This is neglect and abuse.

I know this is long, but we're at the end of our rope over here. Thank you for at least reading this.
 
I know you're not church going folks but have you tried calling a church? Maybe they can direct you towards a lawyer who can really take your side.

When my mom was having legal trouble with my adoption, in a last ditch effort, she called the JCC (she's not Jewish) and, while they didn't officially do anything, the woman who answered the phone was able to help.

You never know.
 
I don't even know what to say, Reg. That's so heartbreaking. I am so, so sorry your family is going through this.
 
Holy cow. What an incredibly stressful and horrible situation to have to deal with on a daily basis. I'm so sorry, I cant even imagine. I wish I had some advice or experience that I could offer. It sounds like you need a really good expert for this situation at the very least. There must be a medication out there that is not hurtful to him that could calm him on a daily basis? :( :hug:
 
:hug::hug::hug::hug:

jess

I'm going to read your post At home and see if there's possibly anything i can suggest....


one thing comes to mind..

it all depends one what kind of resources there are in terms of advocates for people w Autism i9\n your State/City/ town? ( i forget where you are).


Google up someting like um..........

Autism + Advocacy ______________ add your State

or

" Psychiatric Hospital" + abuse advocacy
 
My thoughts and prayers are with you and your family. I'm so sorry you have to go through this. But your love, caring and devotion to your brother is truly amazing. I don't even know you and yet I admire you because of your story.

Has your brother been violent like this before, or is this a new onset? It seems like his violence came out of left-field and took you and your Mom by surprise.

I truly wish the best for you and your family. Keep your strength up and keep fighting for your brother's best interest. And keep leaning on us Interferencers for support. :)

:hug: :hug:
 
i'm so sorry to hear about all this. i can't believe how inept this hospital is being. utterly ridiculous. i really hope the doctor who specializes in autism can look at his case and hopefully suggest something better than the current treatment he's receiving.

i hope you get some good news soon :hug:
 
jess, there must be a solution somewhere. autism management shouldn't be brickwalls and group homes.

what does uradd offer? either legal or medical. Autism

strength to you guys, hon. :hug:
 
Jess, even though I knew a lot of this already, it's truly horrifying to see it all spelled out in one place. Like others have said, there must be some sort of mental health advocacy group in your area? Good luck, keep us posted, and if you need anything, I'm a PM away. :hug:
 
Dear lord!
I'm soo sorry this is happening to you.
Where do you live by the way, because this sounds like complete crap by the psychologist. And they aren't following the ethics rules (at least the ones Ive studied for Canada) and could have there PHD or whatever they have revoked. I've also looked into American insurance systems and sometimes state attorneys will not touch a case because the insurance of families who mostly live by or go to the hospital. Like some hospitals are for lower income families so the state won't touch it. I'm a Canadian so i have no idea if this is true but it's what Ive read and found in research i did.

Best of luck:hug:
 
Two interesting developments:

1. We have a state senator in our back pocket who's ready to do what he can to make this right.

2. The psychologist, who we initially thought was on our side against what the psychiatrists thought, was the one suddenly pushing the group home on Monday. Well, she told my mom she had to have an answer ready by last night cause she wanted to meet with her. Dr Connelly never showed up. And the staff was freaking out, cause she's never not there without calling in. Then one of the psych techs, Steve, who is the greatest guy up there, says that if they do this, they take away Riley from a good mom like mine, that's the last day he'll work there. He's worked in group homes for most of his life and for one, Riley's not ready to go to a group home yet, and two, he's perfectly capable of being treated by the doctors, getting new meds, and then released to us to see if it works at home before we even think about a group home, which is usually a last resort.

Make that three interesting developments.

At the morning meeting yesterday morning, it was said that they were going to try Riley on some new medications, the ones Dr David spoke to us about on Monday. And Riley had an amazing day yesterday. It was like someone flipped a switch and turned Riley back in inside that kid. So Steve thought he was on the new meds and so did we. Nope, he's still on the dangerous combo of Zyprexa and Tenex. They weren't giving him a whole bunch of crap to eat in between meals, so that may have helped. But even the nurse in charge last night thought he was on different meds because he's been told by the doctors FOR WEEKS that they're trying him on new things.

HOW HARD IS IT FOR ALL THESE PEOPLE WHO WORK IN THE SAME DAMN BUILDING TO GET THEIR STORY STRAIGHT? If you're gonna try him on new meds, then try him on new meds. Order them. Don't just say you're going to and then let him keep taking a combo that doesn't work and aren't maintenance medications. :doh: Why does it seem like MDs never know what the hell they're doing? I didn't say all docs, cause most PhDs don't have their heads up their asses. Also, he's not in liver failure. Blood work came back and he's fine. He's not jaundiced either, and the diarrhea and puffiness quit, too. So false alarm, there. Probably another side effect from the double dose of Ativan or the wonderful (read: sarcasm) Zyprexa.

All of our friends and his teachers and even a few staff members at UNI have said that he'll go to a group home over their dead body, so there's going to be a hell of a lot of dead bodies around before he gets moved to one. We'll sign him out AMA first.
 
Hi

I really don't know what to say to you. I read your story yesterday and again this morning and I am just overwhelmed with outrage and sadness and a million other things on your behalf.

My family and I are keeping you in our thoughts and hearts and I hope that a resolution is quick and positive and right for your brother and gives you, your mum and your beautiful brother the peace, happiness and stablility you all deserve.

Your brother is a lucky boy to have such strong, centred, together, loving, compassionate, resourceful and courageous women on his side.

I wish I could do more for you but for now, along with the rest of the blue craic I am sure, I send you love and happiness and peace Reggo :hug: stay strong beautiful girl :)
 
Jess, I just now read this. I can't believe the things you and your family have been put through, just trying to get some help for Riley! My thoughts and prayers are with you all, and I hope that some good things begin to happen soon. :hug:
 
I just read this and I am so sorry that all of you are having to go through this. No question at all that your brother is so lucky to have you and your mom on his side. Hope things start getting a lot better soon :hug:
 
This is the most disturbing story I've read in a long time, I really don't know what to say except that I'll keep you and your family in my thoughts and prayers and hope there will be a solution very soon. This is so heartbreaking. I have some experience with mental diseases in my family and my nephew has a form of autism, but it's nothing like what you're writing. Stay strong and keep up the fight. :hug:
 
reggo , i cant send you enough love, my heart is breaking for you all. there have to be higher authorities and autism experts or peaditricians that can help . i wish you were down under we can do alot here and none of the things that happened to him in that awful place would or could occur .
a group home is no solution untill he is stable . pm me if youw ant to chat further hun , :hug:
 
It's been a hell of a week.

Tuesday and Wednesday Dr Connelly wasn't there, so my mom stewed for three days over whether or not they were going to take Riley away. Meantime, off the Tenex and backed down on the Zyprexa, he's the wild, happy child that was before he started getting violent last year. (We were able to take him on a leave of absence yesterday to the zoo. He wore our asses OUT. :D ) Thursday, Dr Connelly is there and my mom has a fight with her over, well, pretty much everything. And now Dr Connelly avoids us. :doh: I had no idea that a PhD could still be in high school.

So Riley's back to being Riley. He's still on Zyprexa, which we're not happy about. Turns out that everything Dr Lyon or Dr Connelly said that Dr David had said was a total lie. Both Dr David and her case worker, Jennifer, have said, "Whatever they tell you about Riley's treatment plan, just smile and nod and call us." Because we've been told 3 different treatment plans.

Dr David: Back him off the Zyprexa and start Neurontin.
Dr Connelly: Take him off everything cold-turkey (dangerous) see how he does for a day or two (even more dangerous) then start a new drug.
Dr Lyon: Take him off everything and start him on anti-depressants.

:doh::doh::doh:

Fingers crossed that Dr David's treatment plan prevails.

And just for an extra tidbit of...idiocy... Dr Stiefel, the Aspie Autism expert finally agreed to look at Riley's case! :happy: He goes off-service tomorrow. :banghead: They keep this up, I'm going to end up in the goddamn psychiatric hospital!
 
I really hope he gets off the Zyprexa soon. I've got a friend on it, and cannot see how a 7 year old autistic boy has ended up on what my friend has, given the reasons she is on it.

:hug: I hope the nightmare is over soon.
 
Been aware of your troubles for a while but just haven't known what to say. Just letting you know I wish you all the best of luck here, in every way. It sounds nightmarish, and I truly hope things get better for all of you.
 
Back
Top Bottom